Natalie has now been home 5 days and everything is going quite well. It is so wonderful having her home. She really is a very good baby. She sleeps well and is only rarely fussy. We have established a good schedule that seems to work for us. I stay up and do the 11pm and 2am feed. I'm a night owl so I'm up anyway. Ben goes to bed between 9 and 10pm and sleeps until 4:30ish. He then does the 5am and 8am feeding. When he goes back to work, he will feed her, put her back to sleep and go to work. If she stays asleep for a while, I can potentially sleep from 2:45ish to 10ish.
Speaking of eating - since I know everyone is dying to know...
It's so hard being right all the time:-) Natalie has done amazingly well - just like I knew she would. She has taken several full bottles and lots of 40ml bottles. She is taking anywhere from half to two-third of her total feeds through her bottle. I am also starting to give her meds orally and avoid the tube as much as possible. For some reason, I have better luck with her than Ben. He seems to be doing the same thing so I'm not sure why. She is doing so well and we are so proud of her.
Now - on the Abby. I was very distressed Sunday when I talked to the nurse practitioner covering Abby on the weekend. I could tell she was another of those not thrilled with the girls going home on gavage. She also made it sound like Abby would be there until she learned to feed. I was pretty adamant that we were not interested in having that happen. I told her I wanted to meet with the doctors the next day for a pow-wow.
On the bright side, she revealed that all the tests so far have been fine. The ENT saw her Friday and everything looked fine with her throat and vocal cords. The gastro emptying test looked good too. In order words, her stomach is emptying well. The swallow test from last week did show some aspiration into her esophagus as she swallows, but there is nothing they can do for it. She just has to outgrow it. The only thing left is a MRI to reveal any possible neurological damage - which is rather unlikely.
So, one may ask - what's next. If it's not broken and they can't fix it, what's the problem? Personally, I think being in the hospital too long is the problem. I spoke with Dr. Malcolm today by phone and was quite pleased. He is the reflux specialist doctor that Dr. Izatt at DRH kept consulting. We will see him in two weeks with Natalie (and with Abby) so it was good to finally speak with him. I thought I was going to have to get tough like I finally had to do with the girls coming home in the first place, but Dr. Malcolm was wonderful. He had actually been one in favor of them going home with ng tubes and follow-up. He more or less said that if the MRI looked good, she should be able to come home. Although it didn't seem necessary, it was great to report how well Natalie to show that the home system is working.
Bottom line: Natalie is doing great and I really think Abby will be home by the weekend. We just have to hold on a few more days for Abby.
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